I HAVE WHAT?!?!
My Diagnosis Experience
Exert from Chapter Three in my Book,
“Walk With Me My MS Journey” © 2010
By JD Author, Reporter-Journalist
There I sat in the neurologist’s office, nervous as hell, feeling like a cow set for slaughter, trying to soak in the words the doctor had just spoken to me. I knew that something was going on inside my head, but just was not sure what.
It started with headaches almost daily that had progressed into migraines nearly 2 times a week. I was having strange numbness and loss of feeling in my feet and hands. I would have moments where I would lose almost all of my vision for spans of time, and it was beginning to scare me. I knew I had to get answers before it got any worse.
I was not prepared for what I was about to hear. Then he told me what they had found. I could not seem to grasp or absorb it, so I asked him to repeat it again. He stated calmly, “You need to stop working. We need to open up your skull and upper spinal cord and expand your spine and cerebral cortex that is being crushed slowly due to lack of adequate room for spinal fluid flow”. At least one of us was calm, I felt like I was ready to explode at the seams.
The first words that flew out of my mouth were, “are you kidding? Cut what? Do I look like a hamster you can experiment on?” Then he explained it was a condition where evidently the bones in my spine and skull stopped growing before my cerebral cortex and spinal cord did and eventually over the years the lack of space had taken its toll. I now knew the cause of the repeated migraines I had suffered for close to two decades. I had a size seven innards stuffed in a size six frame.
Now there were decisions to make. I was told I can have the surgery real soon or risk the possibility of eventually becoming paralyzed. The surgery itself was risky. I thought to myself, well do I have the surgery and risk dying in the operating room, and being asleep and not knowing it, or do I opt to not have surgery and die suffering?
It was a tough decision either way, because at that time I was not married, and the mother of four teenagers that really had no one else but me or my boyfriend to depend on. No family was available to take on the commitment of raising my kids for me. They couldn’t return to their biological father, his parental rights were terminated years before for in-discretionary reasons.
One month after hearing the news I lay in pre-op listening to a nurse telling my close friends and boyfriend that there is a risk that I may not make it out of surgery. It was delicate and risky to cut into the brain stem and spinal cord. They gave me a mild relaxer and told me there would be a few hours delay due to an emergency surgery. I laid there doubting my decision, feeling fear, praying to God to help me get through it ok or survive at least long enough to watch all my kids graduate from high school.
My friends tried to comfort me, but as time passed the calming drugs wore off and I began to get very restless and agitated. I started to try and get off the gurney and haul ass out of there. Where would I escape to? I was donned in a fashionable hospital gown, ass hanging in the wind, barefoot and dizzy. The nurse standing there reminded me of some guru, ball-breaker, sporting a long needled syringe, and said it was time for me to go to sleep and it would all be over soon.
At that moment I definitely felt as if I had just stepped onto the screen of some “b” rated black and white horror flick. There was never a stronger urge to definitely be walking in someone else’s shoes, whether they fit or not.
I woke up in the intensive care unit feeling like I was laying on something that felt like cold steel, I was totally unable to move. Panic set in. “Was this the morgue?” “Am I dead and don’t know it?” I tried desperately to move and see where I was. All I could see was the light above me, and I could hear the sounds of voices in the distance.
I yelled, “help… someone help me”. A nurse came rushing in and told me not to yell. I of course, reassured now by her reply, knew I was alive, and snapped back quite curtly, “it would be nice if I were not freezing to death laying here unable to move”. She smiled at me and explained that I would be able to move when they removed the steel support plate from under me and the paralytic drugs they had to use during surgery wore off.
Then of course she covered me up with warm blankets, told me to buzz my button if I needed anything, and bailed out leaving me with the call button hanging above my head, and out of reach. I thought to myself, damn karma is a bitch.
Within two days I found myself ushered out of the hospital in a wheelchair, and home to start my recovery. I had an HMO, God forbid I overstay my welcome! I went home barely able to move about. I could not even manage to sit up or stand without help, let alone find my way down the hallway 15 feet to use the bathroom on my own. Thank God for good girlfriends!
My great friend Tammy Andrews came to stay with me for a few days. She helped me out a lot. She cooked, cleaned and kept an eye on my teens. I knew they said it would be a long recovery, but I had to get back to my routine, I had my kids to look after, places to go, things to do, a life to live.
A week later, stumbling, klutzy, and resembling a toddler taking baby steps, I made my way back to being a mom. What I thought was a road to a new beginning at that time I did not know would be the start of many hard roads ahead medically.
The surgery was the easy part and the harder challenges were to come. Especially after the news that the surgery was not very successful and there was no other surgery that could change anything or alter the medical concerns soon to follow.
A copy of my book is available @WALK WITH ME
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